Facing feeding tubes

The evidence that feeding tubes should be avoided in patients with advanced dementia
has accumulated for years now, but the practice persists.

Physicians can face numerous challenges to handling this issue well, according to
those who have studied it. It requires a complex, potentially lengthy discussion with
the patient's family, who may be emotional and not yet understand that advanced dementia
is a terminal disease.

Since these discussions often occur after the patient has been hospitalized, the doctor
involved may have just met the patient and his or her loved ones, said Colleen Christmas,
MD, FACP, a geriatrician and associate professor of medicine at Johns Hopkins School
of Medicine in Baltimore.

“There is a lot that goes into this decision that has nothing to do with science,”
she said, noting that patients' eating difficulties are likely not new, as that's
one of the signs of advancing dementia. “It's very distressing for loved ones
to watch someone get thinner and thinner and thinner and then die.”

But only 52% of the physicians reported feeling in control of the decision to place
a PEG tube in such situations, citing other influences, including family member requests
contrary to physician recommendations. Other influential, although less common, factors
included concerns about potential litigation or requirements by skilled nursing facilities
that a tube be placed prior to admission.

Overcoming these challenges and improving the use of feeding tubes is difficult, but
possible, and hospitalists can play a key role, according to experts.

The facts on feeding tubes

Physicians' wishes for their own care are supported by mounting evidence and guidelines
against feeding tube placement in advanced dementia.

Careful hand feeding remains the preferred option, as it avoids tube-related complications
and the potential need for restraints in individuals with advanced dementia, according
to the current position statement of the American Geriatrics Society, which has been updated several times, most recently in 2014. (That stance also is
highlighted in the society's “Choosing Wisely” list of treatment measures
that doctors and patients should question.)

The statement also notes that there's no evidence that tube feeding extends survival
or prevents aspiration pneumonia.

As a geriatrics fellow, Dr. Christmas decided to research the clinical rationale for
feeding tubes after she was involved with the care of a woman in her nineties who
had been hospitalized after a single bout of aspiration pneumonia. Dr. Christmas was
taken aback by how quickly a feeding tube was placed and how the woman was sent home
no longer able to eat, “which is a really important quality-of-life issue,”
she said.

A colleague suggested that they delve into the research. “The more we looked,
the less we found that there was evidence in support of the practice,” she
said. “The evidence base is pretty thin generally across the board. But where
there is evidence, it actually is largely going against the practice of using feeding
tubes.”

Moreover, a feeding tube can be uncomfortable and confusing for patients with dementia,
who don't understand why they're attached to something, said Marzena Gieniusz, MD,
lead author on the 2018 JAGS study and a geriatrician who practices in the division of geriatrics and palliative
medicine at Northwell Health in New Hyde Park, N.Y.

“They just want to get rid of it, because it's not part of their body,”
she said. “They try to pull it out. The tube also can get clogged or obstructed,”
she said, resulting in ED visits or hospitalizations for tube-related complications
or infections.

Nor does the tube's placement decrease the likelihood of the patient developing aspiration
pneumonia, according to the 1999 JAMA review article. The PEG tube doesn't prevent bacteria in a patient's saliva from migrating
into the lungs, Dr. Christmas said. In fact, everyone aspirates small amounts, such
as when they are sleeping, she said.

Acting on the evidence

One way hospitalists can help bring this evidence into practice is by not ordering
unnecessary swallowing studies. Swallowing tests have “very, very, very little
relationship with clinical outcomes,” Dr. Christmas said. “They're not
good tests. They don't sufficiently predict which patients are going to develop aspiration
and which ones are not.”

Hospital physicians should think twice about ordering a swallowing study, agreed Victoria
Braund, MD, FACP, a geriatrician who directs the division of geriatrics at NorthShore
University HealthSystem, headquartered in Evanston, Ill.

“It's going to put you on a bus to somewhere you don't want to be,”
she said. Dr. Braund noted that she was offering her expertise from a unit that cares
for end-stage Alzheimer's patients. “All of them would flunk a video swallow
study,” she said. “But they are still eating, just soft and pureed food.
We supervise them. We spoon feed them.”

Patients with dementia find it particularly challenging to eat in the hospital given
that it's an unfamiliar environment, they're likely not sleeping well, and they're
being asked to eat in bed rather than in a chair, Dr. Braund said. But once clinicians
see aspiration on a swallowing study, there's a cascade of events that can occur,
as she recounted.

“They're going to say, ‘Oh, speech therapy says they aren't safe to
swallow. We don't want to feed them. We don't want to make them aspirate. And now
we have to put in a feeding tube.’”

As the days when outpatient physicians rounded in the hospital have receded, hospitalists
have increasingly served as the point guard in coordinating care for these patients,
said Arun Swaminath, MD, a gastroenterologist and associate professor of medicine
at the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell in Hempstead,
New York.

Frequently, much of the decision-making conversation about feeding tubes has already
occurred before a gastroenterologist is called in to perform the procedure, he said.
“By the time you are consulted, the family expects a feeding tube to be placed,”
Dr. Swaminath said. “How do we change the velocity of that process, and make
sure that the ‘right’ things are happening?” he said. “When
I say ‘right,’ I put it in quotes, because maybe the right thing is
for the patient to have a feeding tube.”

While in training at University of California, San Diego, Dr. Swaminath was involved
with research that looked at whether the rate of feeding tube placements changed after
a geriatrician got involved.

Along with educating the physicians about the pros and cons of long-term tube feeding,
the geriatrician was also available to sit down with patients and their families when
the procedure was being considered.

Dr. Swaminath, who was later involved in some of those tube placements, said there
was a notable difference in the level of family knowledge and understanding around
their decision. “They feel that they know what they're doing as opposed to
that they are terrified and have to do something.”

Family members can be educated that forgoing tube feeding doesn't necessarily mean
the patient won't eat, Dr. Braund said. Patients should be offered soft and pureed
foods, be placed upright in a chair, and advised to take small bites, she said. If
the patient is in the hospital or a nursing facility, family members can be encouraged
to visit during meal times, and they can help out, connecting with their loved ones
and relieving some of the staff time, she said.

A lot of the decision-making angst around feeding tubes can be averted if the patient's
doctor discusses the future possibility of a feeding tube shortly after the dementia
diagnosis and documents preferences, Dr. Braund said.

If that hasn't happened, there's likely to be emotional strain on the patient's decision
maker, particularly if other family members are weighing in, she said. These decision-making
conversations are complicated by the fact that they are often quite abbreviated. Nearly
half of family members, 41.6%, reported that the discussions they had with clinicians lasted fewer than 15 minutes, according to a study published in JAGS in 2011.

There also are some practical implications of these decisions, Dr. Braund pointed
out. It takes more staff time to carefully hand feed patients, whether in a nursing
facility or the hospital, she said.

This factor can affect transfers to a skilled nursing facility when patients are ready
for discharge, according to Dr. Swaminath. “Often times, those transfers are
delayed or not accepted if the patient doesn't have a feeding tube in place,”
he said.

Moving forward

The good news is that, despite these challenges, practice appears to be moving closer
toward the evidence and recommendations.

Fewer tubes are being placed, according to a JAMAstudy looking at nursing home patients with advanced dementia. By 2014, just 5.7% of those patients got a tube within a year after developing eating
difficulties compared with 11.7% in 2000, according to the findings, published Aug.
16, 2016. Still, there remained a split along racial lines, with 17.5% of black nursing
home patients getting a tube in 2014 versus just 3.1% of white patients.

But both those figures should be closer to 0%, said Dr. Braund. To get to that goal,
it might help to remember to frame these discussions in personal terms, she suggested.

“Families get all tangled up with their own emotions,” Dr. Braund said.
“So I put it back to, ‘We're talking about Mom. What would Mom want?’”
Hospital physicians also can check if the patient's primary care doctor is able to
join in these conversations, helping to guide the family, Dr. Christmas said. At their
heart, these feeding tube discussions require everyone involved to grapple with goals
at the end of life, she said.

“Really what they [family members] want to know is you're not abandoning the
patient, the person that they love,” Dr. Christmas said. “I think the
most important thing is to say, ‘I'm going to continue to offer great care
to this person. And I'm going to continue to offer food if they want it.’”

ACP Hospitalist provides news and information for hospitalists, covering the major issues in the field. All published material, which is covered by copyright, represents the views of the contributor and does not reflect the opinion of the American College of Physicians or any other institution unless clearly stated.